‘People often forget their manners when greeting me and others with facial differences, severe skin conditions and disability. They blurt out what they are thinking about my appearance – often rude and insensitive and often projecting their feelings of insecurities. I just want people to say hello before launching into these questions – though I’d prefer they didn’t ask me at all.

‘I’ve just written a book called “Say Hello” – a memoir and manifesto about living with a facial difference and being disabled. It has stories of my life until now, anecdotes from other people, and advice for engaging with people with facial differences, severe skin conditions and disability.

‘From reading the book, I want people to be confident in their own skin – no matter how different it might be, and to remember their manners when talking to someone people with facial differences, severe skin conditions and disability.

‘I’ve loved receiving messages from people with Ichthyosis (the rare severe skin condition I have), telling me they felt alone until they read my work.’

If you would give your ten year old self words of wisdom, what would they be?

‘I can’t remember when I was ten. I think I was a rebel then and I’m a rebel now. I would have said, “Keep it up kid!”’

‘On the last day we put him in the sunroom and we listened to Triple J and talked and that. I went home about 6 o’clock at night and we got the phone call at 4 o’clock in the morning and were told to come to the hospital. The nurse stepped out to stop us from going straight in to the room and told us. I got to see him and I gave him a kiss and all that and it was very peaceful but I wasn’t expecting it. It’s weird because there were other times during his illness that I was expecting it. The hardest things at those times, like when he had pneumonia so bad he was in intensive care for three weeks and had tubes down his throat and that, I had to realise that you can’t keep them alive for yourself. You’re not the one lying there with tubes down your throat – you can’t expect them to live for you. So I actually said to him, and I don’t know whether he heard me or not, I said, “Don’t stay alive for me.”

‘We were together for 15 years and 9 months. He made me who I am today without a doubt. And he made a lot of people. I think love, it can get you through things but also it’s very, very special. I don’t know that a lot of people will have what Goose and I had. Luckily, at the time, I knew I had it.’

‘I was born in Tanzania but Newtown was where I landed with my family when I was 8. It was our first encounter of Sydney and shaped our idea of Australia being this multicultural society and had a very positive impact. Newtown is a bubble but it shows that we have capacity to be that way as a whole. I feel like it reflects our best side and what we could be on a wider scale.

‘I came from a country where you just see one face so to speak which was my brownness.  That didn’t really mean anything until I came here.  When I came here I was different but there were just so many other differences that it was cool to be different. Newtown is a melting pot of cultures and demographics where we celebrate uniqueness and just being who you are.

‘I really believe in following my intuition and to follow what lights up my heart in whatever I do.

‘Follow your joy – go where you glow; go where you grow.’

‘One of my biggest challenges in life is just dealing with people. With some people it depends on how they’re day is going as to how they approach you as a person.

‘The way I was brought up though means that I just don’t really care about it. You don’t need everyone you meet. There are so many people in the world that if someone puts you down there are other people that can bring you up.’